Further to my last post about some of the practicalities of disabled parenting, the big question seems to be about managing fatigue.
It must be said that Jamie is an astonishingly "good" baby. Still a baby - he cries, he fills his nappy, he vomits, he decorates his entire head with just one spoonful of puree - but he smiles, he cuddles, he plays, he likes being read to, and barring illness he usually manages to sleep through the night. I've been involved in family life with various babies since my teens and I have never known a child like him.
Babies don't read the Equality Act, though. Not even babies like Jamie. They'll accept all sorts of things as normal, but they don't make reasonable adjustments or allow you to work flexitime. Nor is there time off sick - the times when you are ill from colds and tummy bugs, the baby will also likely be ill from the same problem and that will be when they need you to work even harder. And there will be no opportunity to negotiate a reduced workload if it turns out you can't cope. Even asking for help will be a gamble where the worst case scenario is not simply that you don't get help.
I don't say this because I think readers don't know it, or because I'm trying to put disabled people off parenting. I just know that on social media it is nicer to focus on the positive and I don't want to give the impression that I'm finding things easier than they actually are. I'm in an exceptionally privileged set of circumstances with a remarkable level of support, and I'm tending to only report the good bits. I know some people are reading my parenting experiences with half an eye on whether they too could pull it off. I would urge those people, and their prospective co-parents, to really really think hard and research and Talk With Actual Words and come up with backups to the backups to the backup plans before going ahead. I love that I might be able to give you confidence but I don't want to give you false confidence, if you see what I mean.
Of course managing fatigue is a big problem. And as Mel rightly recalled, a condition of my care package is that my PAs are absolutely not allowed to do any parenting. Nor is my funding for them to babysit while I rest. On top of which, part of the reason why I got such a good care package is because my husband works more than full time and there aren't any family members living near enough to help out. So how am I coping?
That's a big question. The short answer is that we're trimming spoon expenditure in every way we can. But that's not a very helpful answer, so here's some (not all!) of the things that make a difference.
The main factor, of course, is the PA support, which doesn't cover childcare but does encompass "supporting me in my role as a parent". At the most extreme end of that, there have been times - I wish there hadn't been, but we all knew it would happen, that's why we asked about support before we dared try to get pregnant - where it's been a case of someone lifting Jamie on to me, and then staying there with their arm around my arm around Jamie while he feeds, reassuring me that they won't let me crush or drop him. Or if I've got temporarily stuck, if Jamie's napping or playing happily then we leave him to it but if he starts to grizzle then the PAs don't comfort him directly, they carry him to where I am and hold him securely face-to-face with me so that I can try to soothe him with eye contact, smiles, stroking, singing and so on. In this way, Jamie's practical and emotional needs are met and there's no confusion about who is fulfilling the parental role.
On a less dramatic level, the PAs continually support with all the little things that I can do once or twice but can't do safely, reliably, repeatedly, or in a timely manner. For instance, I can (caveats apply) hold Jamie in my arms and shuffle on my knees from one room to the other. If the house is on fire, we will escape! But it becomes more difficult and thus riskier every time I do it over the course of a day... so it's the PAs who carry Jamie from room to room alongside me, and I save my "once" for when it's needed.
The remit of the PAs to help me with tasks I have to do as part of my role as Jamie's parent includes some tasks I had to do but did not get help with pre-parenthood. For example, on my previous care package, I didn't get help with housework. But my role as primary caregiver and stay-at-home parent to a very young child who exists mostly at floor level and puts everything in his mouth, requires me to keep his home acceptably clean and keep on top of things like laundry, dishes, grocery shopping, food prep and so on. As such, the PAs do, or help me to do, housework that I previously had to neglect or spend hours struggling to get done on my own. The side effects are that a clean house is a clean house for me as well as for Jamie - and the time and spoons I might previously have spent trying to keep the house clean are suddenly available for me to spend on Jamie.
Some of it is that I'm no longer overdoing energetic things for a prolonged period of time to maximise my use of a one-afternoon-a-week social care arrangement, spending that one afternoon hugely overdoing it whether I was having a good day or not, because that was the afternoon I had booked. With daily support, I can wait for a "better day" for intensive activities, and as soon as I feel like I've had enough I can stop, in the safe knowledge that I can resume again once I feel up to it. In short, with this level of support I can manage my spoons much more flexibly and don't feel compelled to boom-and-bust to get things done, with the result that I am doing more.
Planning and preparation has a huge part to play as well, on the daily level. Fabulous as my care package is, it's not 24/7. So while someone is here, we do everything we can to try and ensure that things run smoothly while I'm alone. Change stations are kept stocked, water bottles refilled, medications are timed for maximum effectiveness at the times I'll be most in need. We have lists!
And, I would be lying if I said that common humanity wasn't a boon. The PAs, for all that they aren't childminders, are additional adults in the house and like any adult they would not willingly allow a child to come to harm. While it's not the PAs job to soothe or entertain Jamie when I have to leave the room (and of course I do wait until he's napping or playing contentedly, and I don't hang about unnecessarily), I can feel confident that they will intervene if he's in danger - I don't have to endanger or exhaust myself rushing to get back in a bid to ensure his safety. Even Social Services, for all the warnings about how the PAs must never have childcare responsibilities, agreed that it was nevertheless appropriate for them to attend the infant first aid course with me in their own right.
Beyond the care package, a big factor for me is increased spoon availability due to equipment. The stairlift has made an enormous difference, I'm not spending endless spoons scrambling up and down the stairs several times a day to use the loo. The powerchair does take less effort than the e-motions, even if it is rather more cumbersome and less versatile. Having "my" car, even though I cannot drive it myself, means not having to work around the availability of accessible taxis. We also have had some baby equipment that has helped, most notably the bednest crib which meant in the first few months he could be brought into our bed for the night feeds and put back once he was full, with neither the difficulties of lifting nor the hazards of co-sleeping.
Conversely, some of it is the joy of no equipment at all. I'm fortunate that I've been able to exclusively breastfeed Jamie for the full first six months as recommended, and am continuing to do so while we introduce other foods. One of the amazing things about breasts is that, as a rule, you don't have to sterilise eight of them per day. You also don't have to juggle a screaming baby while you wait for them to warm up, and even if plans change you never worry about whether you've got a spare one in your bag. It's not an option for everyone and of course it does mean I'm on the hook to wake up and attend for every feed, but it's saved me no end of trouble. We had ideas about Steve giving me occasional breaks with expressed milk from bottles, but Jamie's not a fan - so the fuss of pumping and sterilising and then having to step up and do a five minute comfort-nurse afterwards anyway outweighs any benefit I got from an extra half hour lying down listening to Jamie vocalising how unimpressed he was about being offered milk that wasn't direct from source.
Some of the best advice the OTs gave me was to balance aspirational Perfect Parent ideals against the time/energy/effort cost. A specific example was that, when a particularly bad nappy explosion occurs, there's no prize being given for getting a poo-covered vest off the baby and ending up hurting yourself in the effort to contain the mess, having to do an unscheduled bath, spending ages at the sink trying to scrub the vest clean... remember that the option is there to just get a pair of scissors and cut the vest off and bin it along with the nappy. It's not a solution for every change, it's not eco friendly, it's a waste of money, but in certain circumstances it'll be the most sensible thing to do. See also: disposable nappies vs reusables, pre-packaged foods vs home cooking, having the TV on, car vs walking, and every other guilt-stick that the world uses to beat parents.
The advice for coping with fatigue in all the books/websites/emails/etc is "sleep when baby sleeps!" and this is one of the most upsetting pieces of advice there is, because the baby will taunt you by managing excellent and uneventful sleep at the times and places when you cannot take advantage. What makes this advice even more annoying is that, if you doget the opportunity, it's a good thing to do. There's a big temptation to go "aha! The baby is asleep, I shall Do Things!" but, in my limited experience of the last six months, if the baby is having a nap while you're at home, the best thing to do is to lie down, cover your eyes and nap. If you can't nap, do a breathing/meditation exercise and at least rest your eyes and body. If you can't manage that either, because of pain or hormones or waiting for the health visitor or because you only just woke up and are temporarily not tired, then eat a good quality chocolate and really savour it, or rub moisturiser on your arms, or caress a cup of tea with both hands, or do something else that feels like down time. Things that need an awake brain can be done while the baby is awake. Even if a visitor is willing and able to mind the baby while you sleep, it can be so hard to relax enough to sleep if you can hear the baby making any noise at all - it's not that you don't trust your guest, it's a biological thing. A better solution is if a visitor is willing to play with the baby in the same or the next room while you catch up on your Awake Things - then when the baby sleeps, you'll have fewer things on the "I can't nap because I've got to..." list.
I had intended to get this post done in time for Blogging Against Disablism Day. As it is, I'm still not sure it's "done" but then it's such a big question, it could never be fully answered. Hopefully what's here will help someone, and I can answer more questions about what I've missed in another post!